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Our son Gabriel has had seizures since birth. He is doing a little tummy time (2 months old) here then has a seizure. This is the first time I was able to get it on video for the doctors, it starts at 0:35. Even on his anti seizure drugs he was still having seizures through the medications. We had been in the hospital for over 2 weeks after his birth and were sent home with instructions to try to catch any seizures he had on video. Update: 2-11-2013 Gabriel still seizes approximately 3 times a day at an average of 2 minutes long. We have tried the Ketogenic Diet to no avail, and are currently looking at a future with seizures as our norm. We found out that it is a genetic abnormality in the ARX Gene that is making him have seizures. I will try and catch him having one and upload it at some point here in the near future. Update: 8-24-2020 For all those commenting on this video, a few things. 1: I was verrrrry new to seizures (had never seen one in my life) prior to having my son. Our doctors had said if you try to move his limbs or move his head and they/it are “stuck“ in that position then it is a seizure. Being as he was so small and his seizures were largely non vocal, it was hard to accurately count them early on. Yes I know now that trying to force a movement during a seizure can cause harm and I assure you I was not pushing that hard, simply seeing if he was seizing. Also, as I said, new to seizing so all the comments of lay him on his side, yes I should have done that, but you cant fix what you dont know and sadly I didnt know that at the time. Granted, he didn't have issues from that instance and thankfully never had choking or aspiration pneumonia which is rather unheard of in the medically intractable seizure community. 2: We moved to a state where you could get CBD oil (before it became classified as hemp and legal to use elsewhere) and saw a reduction in his daily seizures. He went from having at least 3 tonic-clonic a day to 1 a week but still had countless spasms. While the CBD helped his quality of life, we didn't see much improvement on the mental side. He was non-mobile, non-vocal and ate via g-tube. He had double hip dysplasia surgery at almost 5 years old due to them being 95% and 75% out of socket respectively (the majority of his seizures he would “scissor“ his legs and effectively trained his muscles to pull his hips out over time). He went on Oxygen for the surgery and his lungs never fully recovered so he was on low flow oxygen at home from then on. Gabe started having cardiac episodes when he was 7 years old. We saw him have a heart rate as high as 210 bpm all the way down to 30bpm in the span of 12 hrs. His seizures started affecting every part of his body. On December 13th, 2019 after having a minor cold, Gabe passed in his sleep, he was almost 8 years old. We take great comfort knowing that he is not suffering and not fighting for bodily peace anymore, though we greatly miss him.
